At Yale, participating in clinical research just got easier

By Karen N. Peart

February 24, 2015

Yale University is launching a series of initiatives that will increase access to its clinical trials program and make it easier for people to participate in clinical research. The aim is to recruit volunteers to participate in clinical trials to help speed the development of new medical treatments that can help countless patients.

Volunteers will be able to find out about clinical trials directly through MyChart, the patient portal that is connected to Yale’s electronic medical record. Patients across the Yale-New Haven Health System can already use MyChart to communicate with their health care providers, access test results, request prescription renewals, and view important health information. Now they can use the “Help Us Discover” tab to find out about clinical studies and set up a profile to keep track of studies they’re interested in. This feature is expected to match people more quickly to clinical trials for which they may be eligible.

“Besides providing world-class clinical care, we conduct many groundbreaking clinical studies, and we wanted to make it as easy as possible for patients to learn about our research,” said Dr. Paul Taheri, deputy dean for clinical affairs and CEO of Yale Medical Group. “Now, with the click of a button, they can identify studies they may be eligible for and let the research team know they’d like to be contacted.” Patients outside of the Yale system will be able to set up MyChart by visiting yalestudies.org.

As part of its push to increase participation in clinical research, the Yale Center for Clinical Investigation (YCCI) surveyed research participants about their experience taking part in clinical trials. Responses showed that financial compensation for participation or expenses took too long and that participants disliked having to cash checks. Beginning in March, the university will launch a new program featuring reloadable and preloaded debit and gift cards that can be quickly issued for research reimbursement. YCCI has also launched a Recruitment Call Center with a phone line that is staffed during extended weekday and weekend hours by English- and Spanish-speaking staff members who can answer questions about participating in clinical research or about specific trials.

The mission of YCCI is to facilitate the translation of medical discoveries from the lab to patients and to train the next generation of clinical scientists. YCCI has received more than $100 million from the National Institutes of Health (NIH) in Clinical and Translational Science Award (CTSA) funding since it was launched in 2006. The CTSA program is currently administered by the NIH’s National Center for Advancing Translational Sciences.

The university’s clinical research program has greatly expanded since YCCI’s creation. There are currently more than 1,000 active research studies to treat conditions that affect large patient populations, as well as rare diseases for which it can be difficult to find an open clinical trial. Although patients have many studies from which to choose, researchers at Yale and other academic medical centers around the world face a continuing shortage of volunteers, especially minorities, children, and cancer patients.

“Just as illnesses affect patients differently, so do treatments. There is a real need to enroll participants that reflect the diversity of the patient population so that we can understand how treatments work across the board,” said YCCI director Dr. Robert Sherwin, section chief of endocrinology at Yale School of Medicine, who is a world-renowned diabetes researcher.

To help address this shortfall, YCCI is seeking to educate minority communities about the need to participate in clinical research. In 2011, YCCI launched the Cultural Ambassadors program with JUNTA for Progressive Action, New Haven’s oldest Latino community-based non-profit organization, and the African Methodist Episcopal (AME) Zion Church, one of the nation’s oldest African-American congregations. “Working closely with Yale researchers has taught me the importance of clinical research,” said Reverend Eldren Morrison, Pastor of Varick Memorial AME Zion Church. “I’ve been able to bring this knowledge back to my community with great results.”

Cultural Ambassadors meet regularly with Yale investigators to facilitate research in areas that were identified as health priorities with the help of New Haven community organizations. They also help create culturally sensitive recruitment materials — including Spanish versions of brochures and other publications. “Language concerns have been a barrier to participating in research, but the Spanish translation Yale provides for research participants when they call the phone line or participate in a study makes it much easier for our community members to get involved.” said Sandra Trevino, executive director of JUNTA.

In addition to clinical trials, there are other ways for patients to take part in medical research. Yale is instituting a new program in which volunteers donate blood and other tissue samples to be held in a secure biorepository so that they are available for future research. These samples may be used to help understand the genetic factors or biological underpinnings of disease in order to help develop potentially life-saving treatments. “Banking samples from volunteers allows us a whole new level of access to patient populations and will speed the pace of research that can lead to medical advances,” said Dr. Kevan Herold, YCCI’s deputy director for translational science, who is also an immunobiologist and diabetes researcher.

Yale is fortifying its research initiatives with a relaunch of the 2012 “Help Us Discover” ad campaign, with additional coverage on Yale shuttle buses that travel around New Haven, as well as to surrounding towns and Yale’s West Campus. The university’s clinical research program now extends across the entire Yale New Haven Health System, which includes Yale-New Haven, Bridgeport and Greenwich hospitals; Northeast Medical Group; Smilow Cancer Hospital; and the Smilow Cancer Care Centers located around the state.